May 25, 2012

May 25 Washington Update

Greetings from Washington.  This week the Department of Health and Human Services announced the Family-to-Family Health Information Center grants for this coming year, the Senate approved a bill that should speed FDA approval of drugs to treat life-threatening conditions, the President asked the Senate to ratify the UN Convention on the Rights of Persons with Disabilities, and government officials mourned the loss of Katie Beckett.

F2F grants awarded

On Wednesday, the Secretary of Health and Human Services (HHS), Kathleen Sebelius, announced the awardees of the F2F grants (new and continuing) for this coming year.  In the HHS news release, HRSA Administrator Mary Wakefield, Ph.D., R.N., was quoted as saying, "The centers benefit all families and especially those with the greatest needs.   They reach out to families and help them and their children thrive."

The HHS news release can be found at The list of grantees can be found at

Katie Beckett

The death of Katie Beckett was met with much sorrow in Washington among Medicaid advocates, lawmakers, and the Secretary of HHS.  Secretary Sebelius issued a statement calling Katie "a quiet hero and an inadvertent pioneer in the civil rights movement for people with disabilities."  The Secretary noted that the "Katie Beckett waiver" has allowed over half a million children with disabilities the chance to live at home with their families instead of in hospitals and institutions.

Iowa Senators Charles Grassley (R) and Tom Harkin (D) went together to the Floor of the Senate to express their sentiments about Katie.  A video of their statements can be found at  (Slide the bar under the video to 3:04:08.  Harkin speaks for 8 minutes then Grassley's remarks begin at 3:12:28.)  Or you can read Senator Grassley's statement at and Senator Harkin's statement at

Senate passes FDA legislation

On Thursday night, the Senate, in a rare show of bipartisanship, passed a bill (96-1) that would continue the collection of fees from pharmaceutical manufacturers in order to fund the drug review process at the FDA.  The legislation would also allow the FDA to speed the approval process for "breakthrough" drugs that "may demonstrate substantial improvement over existing therapies" for those with serious or life-threatening illness.  In addition, the bill addresses recent problems with drug shortages by requiring more manufacturers to give six months' notice to the FDA if they discontinue certain drugs or experience a shortage.  The bill also aims to improve drug safety.  For more information, see or

UN Convention on the Rights of People with Disabilities

In 2009, the United States signed the UN Convention on the Rights of People with Disabilities.  This week, President Obama officially submitted the Convention to the Senate for ratification.  Apparently, the timing was due to pressure exerted by disabilities groups, which had urged the President to seek ratification soon so that the U.S. would be eligible to join an oversight committee to be established by the UN in September.  In a joint statement, a bipartisan group of seven Senators -- John McCain (R-AZ), Dick Durbin (D-IL), Jerry Moran (R-KS), Tom Harkin (D-IA), John Barrasso (R-WY), Chris Coons (D-DE) and Tom Udall (D-NM) -- urged their colleagues to ratify the Convention.  The National Council on Disability, an independent federal agency, also urged swift ratification.  For more information see

Affordable Care Act Implementation Questions and Answers

This week CMS published a set of Q&A documents answering some of the most frequently asked questions they have received from States regarding the Affordable Care Act and Medicaid expansion and simplification. The documents are available at:

F2F funding bills (S. 2123 and H.R. 4083)

There were no new cosponsors this week, so the current tally remains 10 House cosponsors, in addition to sponsor Representative Pallone (D-NJ), and seven Senate cosponsors, in addition to Senator Menendez (D-NJ).  If we hope to get the F2Fs re-funded, Members of Congress will need to hear from F2Fs about how effectively they are spending their federal grant funds, and from families about how important F2F services have been in their lives.

If you would like to discuss how best to make this happen, please feel free to contact the policy team.  (Contact information below.)

As we've said before, if your Members of Congress have not yet cosponsored the legislation, please contact them to ask that they do so.  See the guidance at the end of this update or click here now to send a pre-drafted letter to your Representative.  Also, please forward this information to your family, friends, and health care providers, and ask them to contact their Members of Congress as well.  And, if you haven't done so already, please thank your Senator(s) and Representative who have cosponsored the legislation. You can find their contact information by clicking on their names on the list of cosponsors at the end of this update.

Webinar on Managed Long-Term Services and Supports

Next week, the Administration for Community Living (ACL) will host a webinar -- Managed Long-Term Services and Supports 101 - part of a series of webinars focused on the Affordable Care Act and its impact on older adults, people with disabilities and the aging and disability networks.  The webinar will take place on Tuesday, May 29, 2:00-3:30 pm Eastern.  The webinar will provide an overview of managed long-term services and supports - the history, how such plans currently work, why integration between acute care and long-term services and supports matters, and the challenges associated with such integration.  To register for the online event click here.

Miscellaneous information:

I recently stumbled upon a very interesting article about twin sisters with cystic fibrosis - now 40 years old -- who have written a memoir about living with a chronic illness for many years and then going through lung transplants. The women are also the subject of a documentary, which, like the book, is entitled "The Power of Two."  An article about the sisters can be found in the Stanford alumni magazine at  Information about the book and film can be found at



As always, please feel free to contact us with any questions. 


Brooke Lehmann, MSW, Esq.

Janis Guerney, Esq.


NOTE:  Past issues of the Washington update can be found on the Family Voices home page by scrolling down in the "News Feed" section.


Cosponsors of House F2F funding bill, H.R. 4083, sponsored by Rep. Frank Pallone (D-NJ):

Rep Langevin, James R. [RI-2] - 2/17/2012
Rep Norton, Eleanor Holmes [DC] - 2/17/2012
Rep Pingree, Chellie [ME-1] - 2/17/2012
Rep Cicilline, David N. [RI-1] - 2/17/2012
Rep Michaud, Michael H. [ME-2] - 2/17/2012
Rep Engel, Eliot L. [NY-17] - 2/17/2012
Rep Green, Gene [TX-29] - 3/5/2012
Rep Rangel, Charles B. [NY-15] - 3/8/2012
Rep Roybal-Allard, Lucille [CA-34] - 3/20/2012
Rep Carson, Andre [IN-7] - 4/26/2012


Cosponsors of Senate F2F funding bill, S. 2123, sponsored by Senator Robert Menendez:

Sen Bingaman, Jeff [NM] - 2/17/2012
Sen Conrad, Kent [ND] - 2/17/2012
Sen Snowe, Olympia J. [ME] - 2/17/2012
Sen Whitehouse, Sheldon [RI] - 2/17/2012
Sen Lautenberg, Frank R. [NJ] - 2/17/2012
Sen Kerry, John F. [MA] - 3/13/2012
Sen Klobuchar, Amy [MN] - 5/8/2012

Contacting your Members of Congress about F2F funding bills


All of you who are concerned about the future of F2Fs should contact your Members of Congress to urge that they cosponsor the Menendez or Pallone bill. You can call them through the Capitol switchboard at 202-224-3121.  (To find the names of your Members of Congress, go to  When you speak to the receptionist, state that you are a constituent and ask to speak to the staff person who handles health issues.  If that person is not available to talk, you can leave a BRIEF message identifying yourself as a constituent who has a child with special health care needs (if applicable) and asking that the Representative/Senator cosponsor a bill that would extend funding for Family-to-Family Health Information Centers.  Refer to the appropriate bill number and sponsor - in the Senate, S. 2123, sponsored by Senator Menendez; in the House, H.R. 4083, sponsored by Rep. Pallone.  Leave your home phone number and email address.


You can also write to your Representative (even if you call) via the "Advocacy" section of the Family Voices website, where you will find a pre-written letter that you fill in with your personal information.  (You do not need to know the name of your Representative.)  Please ask families you have worked with, friends, and relatives to write their Representatives through the Family Voices website also.  The URL is   At this time, the website is not configured to automatically send the letter to Senators, but simple instructions about how to contact your Senators, and text to copy and paste, can also be found on that page.  (You do not need to know the names of your Senators.)


Remember:  Federal resources may not be used for lobbying activities.


Please feel free to call Brooke or Janis (contact information above) if you have any questions.